Journey to the Autism Diagnosis

April is Autism Awareness Month and I want to thank my guest poster Rachel Cornelsen for sharing an intimate part of her life–the journey to an autism diagnosis. She will be sharing "Life After the Diagnosis" later this month and I am very appreciative of her contribution and vulnerability.

I always had this “gut feeling” that there was something different about our E (nickname), but I could never put my finger on it until shortly after his third birthday. He would wear toques all the time and would only wear cotton skin tight pajamas unless we were somehow able to convince him to get dressed. He was quite particular about his food, eating Campbell’s tomato soup for at least 2/3 of his daily meals and otherwise consuming mostly foods with smooth or soft textures  such as cream of wheat, oatmeal, smooth smoothies, alphaghetties, and scrambled eggs.

Unexpected change was also very hard for him. One event that stands out in my memory was when we went to the local toy store. We had been there many times because E really enjoyed playing with the train table. However, this particular day, E wasn’t ready to go, even after I let him play longer than usual. This was the first time I experienced what a public meltdown feels like. E started screaming and crying hysterically, I picked him up and had to carry him out of the store under my arm, pulling the stroller with Son#3. I tried putting him in the stroller, which only made things worse. I took him out, and he ran to hide among some shopping carts, refusing to come back so that we could go. It was as if the world had ended. This lasted almost 20 minutes but felt like forever! I felt completely frazzled, furious, overwhelmed, and at a loss of what to do. Once he finally settled down, and he willingly went into the stroller, I took the long way home to cool off. That was the first time I really reached out to my sister, who worked with children with autism, to ask her thoughts on how to deal with a meltdown of this proportion.

Life went on and we had our routine, but there were still things that would happen with E that left me feeling like something wasn’t quite right. The next time E had a meltdown of epic proportions, he was with my sister. She had taken two of the kids to her place to hang out for a bit and was getting ready to bring them home. She messaged me saying they were just leaving and would be there in five minutes, but didn’t show up until half an hour later. It was summer and E was wearing a scarf around his neck (something he did often), and the scarf got messed up when she was buckling him up. E wouldn’t stop crying and trying to get out of his car seat. She wasn’t able to calm him down and ended up driving them home and sitting with E until he was able to settle himself. That was when my sister realized that something wasn’t quite right either. She gave me an occupational therapy (OT) referral form for the Early Intervention program through her work. We filled out a lot of questions related to E’s eating habits, behaviour, self-help skills, and sensitivities, and sent it in. That first step was huge for me! I had hit a point of feeling at such a loss as to how to deal with these meltdowns and all the other little issues there were.

E was starting preschool that September and we had our first OT meeting that month also. The OT met E, watched him play and asked us a variety of questions about him. This meeting was hard for me, but I knew it was a step in the right direction. The OT then did an observation at preschool, as she wanted to get more information in regards to how he acted in a setting with other children. She met with us again and told us that she noticed many red flags that pointed to him being on the Autism Spectrum. This news was very hard to hear. I definitely cried about it.

At this point in our journey, we didn’t tell many people what was going on, only select family and friends. We didn’t know what the result would be and felt we would share more information when there was something to actually share about. That fall saw us with a lot of appointments and meetings, E trying to cope with going to preschool, kindergarten for Son#1, and I was attending night classes to finish up my diploma. Daily life as a family of five was challenging. My plate was full, and life was overwhelming and busy. The few people that I did confide in during this time were a huge support to me; a shoulder to cry on and my prayer warriors.

As E was nearing the age of four, we were told that the wait list for an assessment would be anywhere from 6-12 months, so we decided to seek out a private assessment. This meant we would have to pay for the assessment out of pocket, but the wait time was considerably less (3-4 months). In the New Year, we had more appointments. The first was to see a Pediatrician that specialized in autism. It was his verdict that would give us a referral to a private clinic where we would go to have E tested to see about receiving a diagnosis. I had my sister come along with me and do the most of the talking. I was very emotional, on the verge of tears all day, and drawing blanks when questions were asked. I was relieved when the Doctor did give us the referral as it was a step in the right direction.

This next part of the journey was probably the hardest for me. Since E had a lot of skills and presented well one on-one with an adult, to make sure the psychologist got an accurate picture of E, we had to “prove” that he had the signs of someone with autism. I felt a lot of pressure that we had to get this next part right. We needed to make note of and take videos to have proof of all the behaviours that happened and talk about his sensory issues (clothing, noise, food, etc.), discuss how he was failing socially, and didn’t play with toys appropriately. I felt horrible, but knew that this was the only way he would get a diagnosis which in turn meant we would receive government funding to help E and us. During this time, it was a comfort to have my sister helping us by offering her resources. The people I confided in the most during this time were a few of my sisters who worked in the field of Autism and Special Needs, and my friends at the Moms N’ Tots group I attended. They knew everything! They let me talk, cry, and supported me with prayer, encouraging words and hugs. It was definitely helpful to have this village of ladies surrounding me during this time.

The assessment days came. It was three separate days that we would go have meetings with the psychologist. Each was emotionally draining and I cried during and/or after each of them. We did receive a diagnosis at the last appointment. I had a mixed bag of emotions that day. Tears of joy and thankfulness that he received the diagnosis because it meant he would receive help. Tears of mourning because I knew that life would be very different once intervention therapy started. Tears of apprehension as I knew we would need to share this news with our whole families and how we were going to be changing the way we parented and dealt with our boys. Feeling overwhelmed with all that was ahead – meetings with social workers, taking positive parenting courses, ABA therapy four days a week with meetings every few months – my life was turned upside down. It took a long time to get used to our new “normal”.

There was a song that we started singing at church during this time that became my prayer song. It gave me strength to get through those seven months leading up to and including the diagnosis; it also happened to be E’s favourite song at the time too.


“Your love never fails, it never gives up, it never runs out on me
On and on and on it goes
It overwhelms and satisfies my soul
I never ever have to be afraid
Because this one thing remains
Your love never fails”

 Rachel Cornelsen is a wife to Andrew and mother to four beautiful boys. She is a baker extraordinaire and a Pampered Chef consultant.